Hemophilia Advocacy

It has been nine days since my last article… I try to get a blog post in every other day or so… However, this skipped time was warranted, because I was spending time preparing for the exciting meetings that I had in Annapolis with the rest of the Hemophilia Foundation of Maryland (HFM) peeps. It was our goal to meet with many of the Maryland House Delegates and Senators to discuss the “Health Insurance – Specialty Drugs” bill (House Bill 761 and Senate Bill 874), inform them of the bill and how it will be beneficial to the hemophilia community (and rare chronic disease communities in general), and to ask each of our representatives to please vote “yes” on the upcoming bill.

I was recently elected to the HFM board of directors as one of the advocacy chairs. These meetings with state and federal representatives is just one piece of my role as a hemophilia advocate. And, like everything else in my life, I dove in head first!

This is how my two day march on Annapolis Maryland went:

Monday, February 17, 2014 – My wife Kristine and I piled our children (Trinity and Xander) into our car and drove the 90(ish) minutes to Annapolis. We arrived and checked in at the Historic Maryland Inn of Annapolis on Main Street. This is a gorgeous hotel that throws back (literally) to the 17th and 18th centuries. The elegance and ambiance is immediately heart warming and downright awesome! Our room was spacious and beautiful. After dropping our bag in the room, we headed downstairs for lunch with our fellow easy bleeders (hemophiliacs) to discuss politics and our plan of action.

HFM and a few important sponsors did a fantastic job of supplying us with information packets (for ourselves and the representatives we would visit), providing food and fun, giving us some role-playing examples of how our meetings would go, and covering any additional questions we had. Let the nerves start to tingle and the sweaty hands begin! After the informative meeting, we broke for a few and then went for a fantastic dinner at Buddy’s Crabs & Ribs (an Annapolis staple). Along the trek to Buddy’s, we passed an alley that had a perfect (and serene) view of the Maryland State House… Trinity and Xander were kind enough to pause and pose with this historic monument and achievement.

After dinner, we waddled back up the little hill and entertained ourselves by reading over the materials that HFM provided. Before long, our lights were out and we were sleeping soundly… Until… 1:17 a.m. when Xander suddenly kicked out (he was upside-down in his bed) and knocked the phone off the bedside table. I put it back up, hung the receiver up, spun Xander upright, and climbed back into bed. Just before sleep hit me again, Xander suddenly kicked the phone off again… How the heck did he get spun upside-down again?? Deja vu all over again and then back to sleep. The next morning, Xander told Mommy and me that he had a great dream about Ninjas attacking our family and he protected us by kicking them in their “parts.” Ahhhh… I see… The phone was a ninja’s parts. Now it all makes sense. Xander is five by the way. HA!

Lest this long night be over, Kristine and I were both awakened at 3:09 a.m. to the beeping of a truck in reverse. WTH? I decided to drain myself of last nights iced teas and waters and take a peek out the window. Low and behold, it was snowing… There was a snow plow out there, moving back and forth and beeping along the way… Great. hehe. It honestly felt like that truck stayed below our window and stuck in reverse for two hours.

Perhaps there is a little bit of irony in this story as I think about icy cobblestone streets and brick sidewalks that were recently covered with snowfall. Now picture a handful of hemophiliacs walking said streets and sidewalks. HA! The things we will do to get a vote!

Tuesday, February 18, 2014 – Waking bright and early, we joyfully bounced around the room preparing and packing. A quick shower, shave, and so on and so forth… Soon, I had on my fancy-dancie blue suit (complete with U.S. flag lapel pin) and we were off running. Downstairs we enjoyed a brief breakfast, and then made our way to our first meeting at the Senate building.

Kristine, Trinity, Xander, and I started our day by meeting the Honorable Senator Ronald Young. Firstly, I honestly was expecting to only meet aides… And, it started out looking like we would. The Senator’s aides greeted us, and explained that he was about to leave for the Caucus assembly and he would not have time to see us. However, he overheard us chatting and came out with a smile on his face. Senator Young was very polite and personable. He listened to our story intently. and when we finished he said, “I will absolutely vote yes on this bill.” YAY!

I should note that we were ten minutes early to our meeting with Senator Young and I firmly believe this is why we even had a chance to talk with him. He gladly posed with us (see the “featured” photo at the top) and then took a picture with Trinity and Xander…

Next, we crossed Bladen Street and entered the House of Delegates. We were early, so we dropped off three information folders for delegates that we didn’t have appointments with. One of these aides we met with previously worked with a congressman (I think from Minnesota or Michigan) who had three hemophiliac boys. She was very helpful and said she would not only hand off the folder, but also push our point with the delegate. Another win!

Our final face-to-face was with the Honorable Delegate Michael Hough. It turns out that he is our neighbor, and my wife is actually friends with his wife, Jo. When we first arrived, his aide said that Hough was in session and not available for a meeting. He was kind, sat with us, and said he would pass the info packet on to Delegate Hough. Just before we left the meeting, my wife said, “Mike lives in our neighborhood, and I’m friends with his wife.” This had a very big impact on the aide, and he immediately texted Hough. Moments later, he announced, “Delegate Hough is going to be out of his session with a few minutes to spare before the Caucus and he would very much like to meet your family.” WOW??!!

Delegate Hough was truly awesome and kind as he not only met with Kristine and me (and our kids), but he took time out of his busy schedule to walk us over to the State House and give us a guided tour! He actually walked us through some of the history of the building and told us stories about Washington, Hamilton, and Franklin while walking us into various rooms. We literally got the behind the scenes tour filled with neat tidbit of history.

He took us into the original House of Delegates room; which was recently renovated. In here he took another fun photo with the kids. By now, they were really enjoying themselves and learning so much about our country and the way the government works.

Delegate Hough also showed us the resignation letter of George Washington with a twinkle in his eye. It was incredible awe inspiring and very positive! As we parted ways, he explained to us how we could go up above the Senatorial and Delegate meetings and view them from a balcony. I never knew that we (the public) had so much access, but I learned just how high these representatives hold us, their constituents.

This is Kristine and the kids watching the Delegate session starting up:

All-in-all I would call this trip a huge success. And, an incredibly strong learning session to boot! We met a Delegate and a Senator. We met dozens of aides. We told our story and the story of H.B. 761. We asked for a “yes” vote from everyone. We passed out five information packets. And, I gave away three signed copies of my book, Survivor.

Takeaways

  • Always be completely prepared for meetings with representatives. Study their CV, know the names of their aides, and plan some alternate conversation points, should there be contention. Know what your point of contact looks like, in case you run into them in the hall, rather than their office.
  • Arrive early! The only reason that Senator Young had a few minutes for us, was because we were ten minutes early and caught him on the way out the door.
  • Be confident and well-read. Leave them feeling as though you are someone who carefully studies the issues and also someone who votes!
  • Don’t be afraid to bring your children (if appropriate). Trinity (nine years old) and Xander (five years old) were a bigger hit than me and Kristine. All of the aides loved them, and the representatives were delighted to take photos with these youngins. On top of that, the learning experience for these children was immeasurable!
  • Enjoy yourself and be stress-free. This one may be tough for some, but it is well worth it to approach these people as peers (and actually employees), because they are. We often put them on a pedestal and think they’re impossible to reach. Nothing could be further from the truth. Everyone I’ve ever met has been extremely nice and listened and talked openly and in a friendly manner.
  • Before you part ways with your representative(s), ask for their support, and ask for a “yes” vote. You will be surprised how polite and honest these folks are!
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    I hope you dug this article. And, perhaps even gleaned something from it.

    Cheers,
    Vaughn

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    About Vaughn Ripley

    Vaughn is a happily married daddy, author, and CIO. He is an HIV+ hemophiliac, and is one of the longest surviving HIV+ people in the universe.
    --
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    Read his personal blog: HIVLongevity.com
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    Comments

    1. Great article, great writing and great advocacy for a disease that still most people have not heard of!

    2. This is excellent… thank you so much. So often we forget our representatives are voted in to represent us and our reaching out to them is our right. So with this in mind we have an obligation to research those for whom we vote and not just voting blindly or party alone. We need to vote for those who will do the actual representing of us their constituents. Thank you Vaughn, Kristine, Trinity and Zander for being great examples.

      • So very true! And, something I was not always aware of. I’m proud to be sharing this valuable information with my kids at such an early age. Hopefully they will understand how much power they truly hold.

        Thanks for your kind words!

        -V

    3. JoeyLynn Hough says:

      I loved your story about your trip to Annapolis! It sounded like it was a tough night sleep with Xander fighting off Ninjas, but a successful day with meeting a couple of legislators. My husband, Delegate Michael Hough was very pleased to meet with you and give you a personal tour. I was sorry that I didn’t get to see you, Kristine and the kids while you were here. Let me know the next time you are planning on coming to Annapolis so we can get together. Otherwise, we will see you soon. Take care. God Bless.

    4. This is so great the only way to make change in our community is to stop complaining and get involved. This is great! I love the tips of how to prepare for such a meeting like reading their CV and then just being yourself and relaxing….after all we despite written laws, FDA labels, and even blog sites we are all just people trying to be connected & share this great big world together. Way to make a difference!

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